New Push to Treat the Other Diabetes

With Rise in Type 1 In Adults and Kids, Researchers Aim To Detect, Control Early

Cases of Type 1 diabetes are rising at about 3% a year and it isn't clear why. Thanks to new genetic and antibody tests, researchers can predict who is at risk for developing the disease. Laura Landro has details on Lunch Break. Photo: Percella Scarpinato.

By

Laura Landro

Updated May 8, 2012 3:32 p.m. ET

There is currently no way to prevent or cure Type 1 diabetes, a disease that has been hitting a growing number of children and adults. So, researchers and public-health officials are pushing more people to get tested to detect the illness early, which can reduce some of its dangerous effects.

WSJ's "Informed Patient" columnist Laura Landro and reporter Kate Linebaugh spoke with readers on May 8. Read the full transcript.

As many as three million Americans have Type 1 diabetes, which is an autoimmune disorder that attacks the body's ability to make insulin, a hormone that enables people to get energy from food. Despite the similar sounding names, Type 1 diabetes is very different from the more widespread Type 2 diabetes, which can be controlled and prevented with diet, exercise and medication.

For reasons that aren't clear, cases of Type 1 diabetes, long called juvenile diabetes because it is often diagnosed in young people, have been growing at an annual rate of about 3%. About 30,000 new cases are diagnosed each year—about half of them in adults.

A blood test can help doctors identify the onset of the disease as many as 10 years before symptoms start. Early detection can help patients avoid unknowingly slipping into a critical insulin deficiency, which can be fatal; for many people, a visit to the emergency room offers the first inkling they have the disease. And starting treatment for Type 1 early can guard against long-term dangers including kidney failure, blindness and other complications.

ENLARGE

After a blood test showed he was at risk, Eric Scarpinato, 8, of Grand Prairie, Texas, was diagnosed with Type 1 diabetes in 2008.
Judy Busch

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Type 1 Diabetes TrialNet, a network of 18 research centers conducting clinical trials, is expanding a nationwide free screening program. Tests are being offered to family members of people with Type 1 diabetes, who studies have shown have a 15 times greater risk of developing the condition than the general population. The consortium also hopes information gathered from patients will further its efforts to prevent or cure the disease.

Percella Scarpinato says her son Micheal, 12 years old, was first diagnosed with Type 1 diabetes after a visit to the emergency room with insulin deficiency when he was 6. The following summer, Ms. Scarpinato brought Micheal's half-brother, Eric, who was then 3, to be tested at a TrialNet screening program offered at Micheal's diabetes day camp near their home in Grand Prairie, Texas. Eric tested positive, indicating he was at increased risk for the disease. Later, symptoms began to emerge and Eric was diagnosed with Type 1 diabetes.

Unlike Micheal, who immediately had to be placed on intensive insulin therapy, Eric, who is now 8, was able to start on lower doses and to better adapt to his insulin routine. "It was a different introduction to diabetes because of the screening," says Ms. Scarpinato. "He never had to deal with the shocking and traumatic things that we all had to go through with Micheal's diagnosis."

Ms. Scarpinato, who home schools the children, says the family now has a diabetic-alert dog that is sensitive to certain smells that signal low blood sugar in the boys. Both children are doing well, she says.

"There is a real advantage to finding out your risk status," says Judith Fradkin, director of the division of the National Institute of Diabetes and Digestive and Kidney Diseases that is providing funding for TrialNet. "There is evidence that people who get screened and find out they are at high risk are less likely to present [at the emergency room] with a severe crisis that is out of control and can be fatal."

The screening program also helps TrialNet recruit volunteers for its research. In one study, for example, researchers are testing whether one insulin capsule a day can prevent or delay the onset of Type 1 diabetes in certain patients.

In Type 1 diabetes, the body's immune system mistakenly destroys insulin-producing cells in the pancreas, causing sugar to build up in the bloodstream where it can cause life-threatening complications. Signs and symptoms of the disease can emerge fast, and include increased thirst, extreme hunger, frequent urination, weight loss, fatigue and blurred vision. People with Type 1 diabetes require lifelong insulin injections.

While the exact cause of Type 1 diabetes isn't known, researchers are finding that a combination of hereditary and environmental factors can trigger it, including about 50 genes linked to the disease. In one study in the U.S. and Europe, half a million newborns have been screened for genetic risk, and more than 8,000 children at the highest risk are being followed to determine if diet and exposure to infectious agents like viruses could be a factor in its development. For reasons that aren't clear, the disease is increasing at its fastest rate in children under age 5.

The more genes one shares with other family members who have been diagnosed, the higher the risk, says Richard Insel, chief scientific officer at JDRF, formerly known as the Juvenile Diabetes Research Foundation, which also provides funding for TrialNet. Screening tests are being offered to anyone 45 years old or younger with a sibling, parent or child with the disease. People 20 years old or younger with a cousin, aunt, uncle, niece, nephew, half-sibling or grandparent with the disease also are being encouraged to get screened. The program offers to send kits to people who aren't near a testing site to bring to their doctor or a local lab.

Screenings test the blood for certain antibodies that signal an increased risk for Type 1 diabetes. People who test positive are asked to join a monitoring study that estimates the level of risk for developing the disease, says Henry Rodriguez, a TrialNet principal investigator at the University of South Florida. Patients at highest risk are followed up twice a year for blood tests and oral glucose-tolerance tests, which measure blood sugar after a patient drinks a sugar-containing beverage.

TrialNet, which so far has about 200 screening sites at medical centers, doctor's offices and other locations, has so far tested more than 100,000 people, according to its chairman, Jay Skyler. About 5% of those tested have had one or more of the antibodies that signal an increased risk for developing Type 1 diabetes. To find test locations, go to www.diabetestrialnet.org.

Some people wrongly assume that Type 1 diabetes only affects young people. Donald Waldon, a 42-year-old maintenance technician in Athens, Ga., was screened last year through the TrialNet program at a JDRF fundraising walk. Two of Mr. Waldon's three siblings have the disease, and his 15-year-old son was diagnosed at age 10. Mr. Waldon tested positive for the antibodies that signal an increased risk and is now participating in the monitoring program. He says it never occurred to him that he might be at risk because he hadn't developed the disease at this point in his life.

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